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November is our month. We need to add something to our advocacy agenda--low dose screening. We know that lung cancer found early is lung cancer treated successfully and extended life. Low dose CT scans find lung cancer early. But, did you know that only about 2%* of people eligible for low dose screening actually get screened? Only 2-percent!

If you are on this forum, you understand the devastation of late-stage diagnosis. You are living the treatment mayhem. We need to rise up as a community and scream "Get Screened". We need to move the dismal 2% number dramatically. Early finds mean easier treatments and extended life. Let's start screaming!

Stay the course.

Tom

* Lungevity Lunch and Learn Presentation, Nov. 7, 2020, The James Cancer Center, The Ohio State University,

 

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I've had occasion to think about screening since my Stage IV diagnosis. I have my story posted online at www.savedbythescan.com--written/posted when I was thinking my lobectomy three years ago "cured" me. 

Per my doctors, there is no way to tell whether the cancer I have now is a spread from my original tumor or whether this is something entirely separate. I was a smoker, so I'll remain at risk for lung cancer for the rest of my life, I suppose. 

Still, the original screening scan caught the original cancer, which led to scans every six months (rather than annual), and even though I'm Stage IV now, the cancer isn't nearly as extensive in my case as it is for many people when diagnosed. IOW, the lung cancer was on my radar and it might have been much worse if I weren't looking for it.

So I'll go with the idea that it "saved" me--for all I know, it did!

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I know a few people I can touch with this message.  Most are more likely afraid of the test than bothered by it as an inconvenience, but I'll try.  If it can help one person than it's worth it.  Thanks for the "heads up" on this Tom.  Thanks for the PDF Lexie, it is a good opener that I can send to some folks I know.

Lou

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The way I looked at screening was this. If I had lung cancer, I had it, whether I looked at it or not. If I looked, I could potentially do something about it before it was too late. If I DIDN'T look, by the time I had symptoms, it might be too far advanced to effectively treat. 

I still remember getting the call about the very first screening while I was in NYC's Penn Station, about to get on a train. I freaked out that they wanted me to come in to discuss the result. The scheduler told me they always wanted to discuss the results--it didn't mean anything serious found. Turned out I had a few nodules they wanted to watch--the pulmonologist wanted to re-scan in 4 months, and at that point nothing had changed so I was told to come back in a year. THAT was when the  one nodule had grown and taken on a spiculated appearance, which led to the lobectomy. 

I joined this group shortly before my surgery, and everyone here was so welcoming and reassuring it made everything less scary. 

I totally believe in the scans--I encourage any smokers or heavy smokers who recently quit to go for it. Compared to something like a colonoscopy--or even a mammogram (which can be painful) or a pap smear (which involves a pelvic exam that is never pleasant), it's a piece of cake.

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One other thing we need to advocate for is to change the current Screening Guidelines.   I know it's a slow process and wey are making steps, but many of us NEVER fit the Criteria (age, non smokers, light smokers) and so on.   Hopefully in time, ANYONE who feels they may be at risk (family history, exposure to second hand smoke, exposure to Radon), Smokers and Former smokers (under 55) - will all be eligible for this vital screening.

I never met the criteria for screening and of course, having quit smoking several years ago and having lots of clear chest xrays, I thought I was in the clear.   Boy was I wrong!  Diagnosed at Stage IV, after it spread to my brain and caused neuro changes.   Even then, the day I learned in the ER that I had a brain tumor, I never dreamed it would turn out being Metastatic Lung Cancer.  

I was someone who never had any warning or symptoms of Lung Cancer, so I would never have even thought about asking for a screening.   Just six weeks before my diagnosis, I was hospitalized for routine surgery and at that time I had labs and of course a routine chest xray -- everything was clear and fine.   The day after surgery I developed a sudden onset fever and at first they thought I had the Flu, but a Flu test was done and was negative.  They then brought a portable xray to the room and did another chest xray and said I had "post op" pneumonia?   I had two more xrays before I was discharged later that week and all they saw was signs of pneumonia?  Clearly this missed the lung tumor (why or how) I have no CLUE, but maybe, just maybe IF I had also had a chest CT it would have been found?  Who knows but I do know no one ever suspected Lung Cancer that's for sure.

But....there I was in the ER six weeks later, with a Brain tumor which turned out to be a Met.  Two days later, while hospitalized they finally did do a Chest CT and not only did I have a lung tumor but I also had a Pulmonary Embolism -- yet I had NO symptoms of either???    -- That brain met and the sudden neuro changes may have saved me life.  Who knows what could have happened if that PE went to my heart?    Scary thought and another reason WHY screenings are so important and need to be expanded!

I'm curious, IF someone under 55 (never smoker or former smoker) had some symtoms and went in asking for a Chest CT, WOULD it be covered by insurance WITH symptoms?  I sure HOPE so that that is one thing I recommend to everyone to request (not matter what your age and smoking status maybe)!  IF you have ANY symptoms PLEASE ask for a CT, it could save your life, EVEN if you later find out that it may be not fully covered, isn't your life worth the cost!  I SAY YES!!!!

 

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I'm pretty sure that with symptoms, a scan would be covered by insurance as a diagnostic tool. The reason screening scans aren't covered is that apparently there is, statistically, a greater risk of harm than good that would come of screening where you don't have the risk factors, based on things like additional testing, biopsies, etc., as a result of false positives. I'm no expert, but that's what I've read--I think it's the cancer professionals who say that, not the insurance companies.

From what I understand, though, the cost of a LDCT scan is a couple hundred dollars without insurance. So for most people if you have reason to be concerned and want to be tested, it isn't an exorbitant cost. Presumably, if nodules are found that would be a reason to continue follow-up scans. 

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  I think that MOST people do not even know the screening exists and that's something we do need to SCREAM and also something we need to ALL remind our friends and family about - as well as our Primary Care MD's!    

 

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The cost of a chest CT scan is only a couple hundred dollars. I had one in January 2019 looking for coronary artery calcification. That's when my left lung mass was reported but my PCP's office somehow missed the remark. I wasn't diagnosed until October 2019.

In addition to all of the screening above, I encourage anyone who was exposed to 9/11 dust to join the World Trade Center Health Program and get annual free screenings. If I had known about this and followed through, my NSCLC could have been found in an early stage. 

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After two years of my pestering, my sister has FiNALLY agreed to go for a low dose CT scan.  The challenge now is the NJ healthcare system is still backlogged from COVID, she can't get in to see her PCP until late January.   When I told her how to go about getting the insurance to pay for this, she said "you mean my doctor has to lie to the insurance company to pay for the scan???".      I said: nope, just gotta know how to work the system....    Even though she has no risk factors, I have lung cancer and my mother has cancer in her lungs, it's enough to get my sister moving.....    I will stay on top of this for her! 

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Given that the cost of a LDCT scan is a couple hundred dollars, make sure she knows about the option to pay for the scan out of pocket. If she can afford it, it might be worth it to avoid the kinds of battles you've been dealing with. I mean, it never hurts to try and see if they will cover it based on the familial risk, but if they don't, I for one would rather pay a couple hundred dollars than fight over it.

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Trust me, she can afford this....  Last year the priority was replacing her teak patio set & driving Ferrari’s in Italy.   I think it took my Mother’s ordeal this summer to break through the sweep it under the rug syndrome!    

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On 11/8/2020 at 3:14 PM, LexieCat said:

From what I understand, though, the cost of a LDCT scan is a couple hundred dollars without insurance. So for most people if you have reason to be concerned and want to be tested, it isn't an exorbitant cost.

After my husband's diagnosis out of the blue last year (non-smoker with no symptoms whatsoever) I asked my doctor to order a LDCT for me. He said he wasn't certain that insurance would cover it, but even if they didn't they were offering them at the hospital for a $100 flat fee. I figured that was well worth the peace of mind. It turned out that insurance covered it completely, and now I'm set up to be screened annually. (I just had my second one, and all is clear at this point.)

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Please don't rely on chest x-rays, I had four all six weeks before my diagnosis of Stage IV, two were clear and two found post op pneumonia after hip surgery.  I never had any signs or symptoms of cancer or pneumonia so we never even thought about a CT?  :sad:. Thankful for my Neuro symptoms, if not those I'm not sure how ever, it's crazy.

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